Emma's Story

Our sweet little girl Emma was born in November 2005 with congenital hydrocephalus. For those of you not familiar with hydrocephalus, it is a buildup of blocked cerebrospinal fluid (CSF) within the brain that is present at birth. One week before my due date, I thought my water had broken. My husband and I were so excited, we headed to the hospital with our bags packed and couldn't wait to welcome our baby girl into the world. At the hospital, the doctor did a series of tests and determined my water, in fact, did not break. I insisted something felt different and wasn't comfortable going home. Because of that, the doctor ordered a ultrasound. The doctor came back to our room a few hours later and informed us that our daughter had hydrocephalus and that they would need to perform an emergency C-Section delivery the following day. He also explained that our sweet Emma would require neurosurgery within a few days after she was born. As you can imagine my husband and I were in shock. We had never heard of hydrocephalus before that day. We wondered how this could be happening to us. We did everything right. I had the perfect pregnancy. Our minds raced as we considered what this would mean for our lives as a new family. Needless to say we very anxiously awaited her arrival. I remembered the old saying "a baby changes everything" but having a special needs baby really would change everything!

Emma had neurosurgery three days after she was born. The treatment for Emma's hydrocephalus was to surgically insert a shunt which allows the CSF out of her head through drainage tubing into her belly where it can be absorbed. The shunt was placed behind her ear and the tubing was threaded from behind the ear, under the skin, to the belly. It still amazes me! The great thing, especially for girls, is their hair grows over the bump under the skin behind the ear and you really don't even notice it's there! Emma was discharged 8 days after she was born and we were on our way to taking her home and raising Emma with all a tremendous amount of love and support from us and our extended family.

Over this past few year, Emma has had two shunt malfunctions and multiple seizures and as you can imagine, although she is happy and healthy the majority of the time, when the malfunctions or seizures happen, it is a strong reminder that we are special needs parents and that we must to rise to the occasion when these things happen. As one Neurosurgeon told me, we are shunt parents; we have to be strong for Emma! There is no way to know when or why they are going to happen but they CAN so we have to be prepared and make sure our baby is safe and in the right place for the best care. This is why living in Boston and having Boston Children’s Hospital as Emma’s primary center of care helps put us at ease (if that’s really possible) as we are surrounded by amazing doctors who continue to amaze us with their level of care and compassion!

Emma is a thriving, beautiful, social and funny little girl. My husband and I always focus on the wonderful progress Emma is making and try not to focus on what she isn't doing (yet) or by looking too far in the future and imagine what might be. Our pediatrician when Emma was an newborn told us something that has always stuck with me and makes sense on so many levels – don’t’ borrow trouble!

Our motto with Emma has always been "slow and steady wins the race." Emma is making wonderful progress each and every day but the reality is she isn't able to sit independently, walk, or crawl at this point in her maturation. She just started speaking her first words and we couldn't be happier. She says her own name, Ball and of course her dogs name – his name is Kona but she calls him Ah-Ba! So cute! Of course, like all parents, we wonder what the future holds for our precious Emma. Her delays are a constant source of concern. We hope and pray that Emma will become a mobile child and grow into a mobile and autonomous adult. We find great comfort in knowing she attends a wonderful school with loving and compassionate teachers and therapists and that she is surrounded by typical children in an integrated school environment.
Bella’s Angels has helped cover costs for a wheelchair, summer therapies, adjustments to her chair, and hospital stay expenses that were not covered by insurance.  

My husband and I grow stronger each and every day as we know that we are on a road less traveled, having had a special needs child. But, having Emma has been the biggest blessing in our life! We will and continue to do all we can for our sweet angel and we are touched by how many people’s lives have been touched by Emma near and far! I cherish each and every milestone (none are ever too small) Emma makes and can’t wait to see what she will do next! For that I am eternally grateful.
Having a special needs child requires parents to meet big challenges head on! We need to be organized, focused and most importantly, effective advocates for our children. At the end of a long day, that's what matters the most!